https://bnf.nice.org.uk/drug/palperidone.html

Palperidone:  

For Schizophrenia, psychotic or manic symptoms of Schizoaffective disorder

Cautions:

Blood dyscrasias, cardiovascular disease, conditions predisposing to seizures, depression, diabetes (may raise blood glucose), epilepsy, history of jaundice, myasthenia gravis, Parkinson’s disease (may be exacerbated) (in adults); photosensitisation (may occur with higher dosages) prostatic hypertrophy (in adults) severe respiratory disease, susceptibility to angle-closure glaucoma.

Cautions – Further information

Cardiovascular Disease  –  An ECG may be required particularly if physical examination identifies cardiovascular risk factors, personal history of cardiovascular disease, or in cases where the patient is being admitted as an inpatient.

RARE   – SUDDEN DEATH – WITHDRAWAL SYNDROME NEONATAL

ELDERLY

For all anti-psychotics (other than quetiapine and clozapine) in patients with parkinsonism or Lewy Body Disease (risk of severe extrapyramidal symptoms)

increased risk of stroke

for use as a hypnotic, unless sleep disorder is due to psychosis or dementia – risk of confusion, hypotension, extrapyramidal side effects and falls.

for patients prone to falls (may cause gait dyspraxia, parkinsonism)

The above just some of the things listed.

Side Effects:

Agitation, amenorrhoea, arrhythmias, constipation, dizziness, drowsiness, dry mouth, QT interval prolongation, rash, seizure tremor vomiting, weight increased, movement disorders, insomnia

Agranulocytosis, embolis, Neuroleptic malignant syndrome  Sudden death withdrawal syndrome neonatal  Yes I have seen Elizabeth suffer Neuroleptic Malignant Syndrome on Clozapine.

appetite abnormal, asthenia, anxiety, cardiac conduction disorders, cough, depression diarrhoea, fever, gastrointestinal discomfort, headache, hyperglycaemia, hypertension, increased risk of infection, joint disorders, laryngeal pain, mood altered, nasal congestion, nausea, oral disorders, pain, skin reactions, vision disorders., sexual dysfunction, vertigo, oedema, muscle weakness, palpitations……etc etc

PREGNANCY –  Extrapyramidal effects and withdrawal syndrome, agitation, hypertonia, tremor, drowsiness, feeding problems and respiratory distress

FOR PALIPERIDONE  USE ONLY IF POTENTIAL BENEFIT OUTWEIGHTS RISK  =  toxicity in animal studies.   YES THERE ARE SUBSTANTIAL RISKS AND THE DRUG IS BEING PRESCRIBED AGAINST COTRAINDICATIONS

Manufacturer advises to consider long acting nature of formulation – Palperidone is detected in plasma up to 18 months after a single dose.

CHILDREN  – regular clinical monitoring of endocrine function should be considered when children are taking an antipsychotic drug known to increase prolactin levels.  This includes measuring weight and height, assessing sexual maturation and monitoring menstrual function.

Risk of relapse if medication stopped after 1 – 2 years.  Withdrawal should always be gradual and closely monitored to avoid risk of acute withdrawal syndromes or rapid relapse.  Patients should be monitored for 2 years after withdrawal of antipsychotic medication for signs and symptoms of relapse.

• Dr Neil Sarkar is RC on Ruby Ward
• Dr Helen Moorey is RC on Suffolk Ward Chase Farm Hospital

The “care” is being provided by local area ENFIELD at a cost of circa £450 a day to stay on a NHS ward  (or it may well be more as this is a PICU ward) or £900 a day on a private ward.   The care is not to assess Elizabeth’s underlying physical health conditions but purely put her on a power dangerous depot injection and try to justify themselves for doing that.   I had begged that she be sent to a brain trauma injury ward for assessment but ENFIELD MENTAL HEALTH have chosen to ignore the physical health of my daughter.   How many more I wonder have been affected in this way?   So they use facilities like Ruby Ward but they are the ones dictating behind the scenes as to the care as this is being provided by ENFIELD.

“Dear Ms Bevis,

Thank you for your e-mail.

I have read it carefully and appreciate you sending us information which you believe will help in your daughter’s care.

I cannot fully comment on all the points you raised, but will certainly investigate as much as possible. I will try to obtain some of these reports, especially the opinion from the National Psychosis Unit.  I have all their files of shocking content.

The Opinion of “Treatment Resistance” identified by Royal Bethlem has been dropped by ENFIELD despite the P450 liver enzyme test results.   The Opinion on diagnosis by several other doctors differs but I feel the correct opinion is Complex PTSD by Dr Bob Johnson and Selyes Generalised Adaptational Syndrome which has been completely ignored.   She has gone back to being a young teenager. Elizabeth was severely abused under Moti Villa scheme in the community going back to 2010.  She has a Learning Disability;  she has a brain injury noted by Dr Diane Caine in 2009 which has been ignored.  You cannot treat a brain injury with antipsychotic drugs.  Metformine was prescribed off label at Royal Bethlem – only an Endocrinologist should prescribe this off label.   Tachycardia was contracted on titration of Clozapine. 

1. We do not have Elizabeth’s consent to discuss her case with you and we are not allowed to share information about her with you. However, we can receive information from you. Elizabeth has given her consent so now you can discuss and share.   

Elizabeth is likely to only be under our care on Ruby Ward Women’s PICU for a short period of time until any aggression and risk has been reduced. This is on average 2 weeks, but can be even less.  Noted.   However just look at the side effects of this drug agitation is noted as a side effect and skin irritation SO A DRUG LIKE THIS CAN ACTUALLY CAUSE AGITATION – HOW DOES THIS WORK THEN???

However I thought her time spent with you was to assess her properly.   She needs to be assessed by a Endocrinologist;  Neurologist.    

 When I spoke to my daughter on the ward phone yesterday she sounded very distressed about these injections.  She was complaining of chest pains yesterday.

Please confirm and also why you have not referred her to the Psychodynamic Psychotherapist for assessment.

https://www.psychologytoday.com/gb/blog/advancing-psychiatry/201904/chronic-schizophrenia-put-remission-without-medication

Overall responsibility for her care will be under ENFIELD mental health services thereafter and we need to work in close conjunction with them throughout.   How interesting – they have chosen to ignore “Anterior Region Medial Temporal Comprise back in a 2009 report.

Regardless of Enfield, you have duty of care for my daughter and better resources at your hospital than Enfield.                        

Enfield have neglected her physical health leading to her going downhill time and time again.   It was suggested at a previous tribunal that full hormone checks be done..   Neither referral to Endocrinologist or for MRI scan has been made.

Physical health should be paramount.  I am referring this fact to my local MP and The Rt Hon Kier Starmar.  My  daughter has suffered injury because her physical health is being ignored.

We therefore would not be making any major changes to her overall care, but just trying to stabilise her in the short term and then referring her back to Enfield services. I am very disappointed to hear this because you have something good on your site ie psychodynamic psychotherapy.   It would seem…

2. I will pass on your e-mails with Enfield services, so they are also aware of your concerns and opinion, as your daughter’s long term care will be with them.   Then perhaps Elizabeth will only be treated fairly and not neglected in terms of her physical health if she moves away from Enfield.

I hope you can understand our position. I do not understand how any Doctor can ignore underlying physical health conditions documented in reports no matter what because every Doctor should have a duty of care.  The matter of mental health being on par with physical health therefore needs to be addressed.

The other reason I object to depot injections is the fact that Elizabeth is “treatment resistant” and a poor/non metaboliser. 

Prolongation of the QT Interval can cause heart arrhythmia to someone who has low blood potassium and at risk of a heart attack.

So what level of Potassium is the result? 

What are the magnesium levels also and the prolactin levels?   –  magnesium also recorded as “low”

My daughter should not be having this drug because it is contra indicated and i am particularly concerned about the prolongation of the QT Interval. Throughout the files Elizabeth is recorded as having an irregular heart arrhythmia.  Also who exactly is responsible for the very specialised administration of this expensive  drug.  Risperidone was previously found to be allergic to but this has been ignored by ENFIELD? so Palperidone – metabolite highly dangerous to someone low in Potassium – prolonged QT interval – risk of heart attack.   WHY IS THIS DRUG BEING PRESCRIBED ENFIELD especially in light of the following contraindications noted in bold.

Who should not take Paliperidone Palmitate Syringe?

The following conditions are contraindicated with this drug. Check with your physician if you have any of the following:   Yes Elizabeth does have as highlighted in yellow.

Conditions:

• breast cancer
• diabetes  – not sure – has PCOS and is insulin resistant – private Endocrinology tests 

• a high prolactin level
• excessive fat in the blood
• low amount of magnesium in the blood
• dehydration
• low amount of potassium in the blood
• overweight
• very low levels of granulocytes
• a type of white blood cell
• low levels of white blood cells
• low levels of a type of white blood cell called neutrophils
• confusion
• suicidal thoughts
• a type of movement disorder called parkinsonism
• tardive dyskinesia
• a disorder characterized by involuntary movements of the face
• mouth and tongue   – seen that on Clozapine
• neuroleptic malignant syndrome
• a reaction characterized by fever
• muscle rigidity and confusion
• a low seizure threshold
• a heart attack
• angina
• a type of chest pain
• torsades de pointes
• a type of abnormal heart rhythm  –  (has suffered palpitations and tachycardia recorded in files of the Bethlem and Mews Score 3 critical)
• chronic heart failure
• abnormal EKG with QT changes from birth  Not sure – were complications at birth
• a disorder of the blood vessels of the brain
• orthostatic hypotension
• a form of low blood pressure
• compression of the esophagus
• priapism
• a prolonged erection of the penis
• seizures
• weight gain
• susceptible to breathing fluid into lungs
• pregnancy
• decreased blood volume
• problems with food passing through the esophagus
• metabolic syndrome x
• dementia in an elderly person   I have had extensive private tests done  genetic tests done that point to interesting results
• diffuse Lewy body disease
• cataract surgery  Has complained of pain to eyes and index finger/joint pains like Arthrytis
• floppy iris during eye surgery
• abnormal muscle movements  –  yes on Clozapine
• chronic kidney disease stage 2 (mild)
• chronic kidney disease stage 3A (moderate) –  thought I had seen this in the files 
• chronic kidney disease stage 3B (moderate)
• chronic kidney disease stage 4 (severe)

Allergies:  Used to have chronic asthma as a child

• Risperidone Analogues

I look forward to hearing from you about my main concerns on contraindications because of Xeplion (Palperidone).

ACCOUNTABILITY

There seems to be a problem with Elizabeth’s phone.  She phoned me tonight on the office phone from Ruby Ward.  Sounded disorientated.  On such a lovely day it is so hard to think of my daughter and others cooped up on wards such as this and it has been some time now since Elizabeth has had fresh air.   If she was here now I would take her for a drive to the coast but feel in total despair particularly when I finally heard from her tonight talking about an injection.   I decided to phone the ward and it sounded like Haloperidal.   Either she had had an injection or was about to.   I’m glad I did phone the ward as I heard the plan was to put her on depot injections tomorrow apparently.  Elizabeth’s condition is complex PTSD.   Under NICE Guidelines the following is stated:

Drug treatments for adults

• Drug treatments for PTSD should NOT be used as a routine first-line treatment for adults (in general use or by specialist mental health professionals) in preference to a trauma-focused psychological therapy.

Elizabeth has been crying out for therapy not drugs and was trying to arrange this herself in the absence of any care whatsoever provided by the local area of ENFIELD.   I cant believe that Ruby Ward is considering this especially when they know that Elizabeth is “treatment resistant” and cannot metabolise the drugs.

She has twice now been put in the community without any care in place.

She has been let down by the PRIMARY CARE in ENFIELD.

I am going to write to Dr Sarkar who is the Responsible Clinician to voice my concerns tonight.   I have seen better things on offer at this hospital than in Enfield for instance Psychodynamic Psychotherapy.

Up until now I do not think that Elizabeth has had any therapy and has been drugged up on Clonazepam to the point that you could hardly hear what she was saying,as she was talking in a slurred manner.

My concerns are that under Secondary care due consideration is not being given to a patient’s physical health and I would like something done about this.  Elizabeth needs a thorough check on her physical health and it is negligent of any Doctors to ignore this.  I have already proven there are physical health problems.

Before any thought of depot injections is given Elizabeth’s physical health concerns need to be addressed by Doctors who specialise in the field of Neurology and Endocrinology as Elizabeth has a full report by Dr Bob Johnson stating Complex PTSD –  Dr Mukherjee from Enfield had to agree to this following the Wonderful care I provided for Elizabeth in 2016 when she came back from Australia well.   So it is not drug treatment that is the right thing for someone with complex PTSD and I have seen that at St Pancreas Hospital they have the right treatment on site.  Never before has Elizabeth had EMDR but Dr R D Laing’s friend and former colleague wrote to me: Psychiatrists are usually just physicians and not trained psychoanalytically.  Denis Berke and R D Laing were psychoanalysts.  It might take longer to treat someone with psychoanalytical psychotherapy and without drugs but it is successful.  It is up to a psychoanalytical psychotherapist to assess someone as suitable for that NOT A PSYCHIATRIST.”  “I was once asked at Kings College Hospital London what drugs I used when treating patients with psychosis.  When I said that as a psychoanalyst I did not use drugs they were shocked.  I was shocked that they were shocked”.

Today was a meeting at the hospital which in the end I was included but what I find happens is that Doctors try to say that the patient does not want to share information.  On so many occasions Doctors hide behind “confidentiality” only this time there were witnesses to the contrary.   If only there was a better system over here like in Norway and Finland with Open Dialogue.   I’m writing about this at the moment in my book.  Transparency, openness and honesty are the key and inclusion rather than exclusion.

Elizabeth has been totally damaged by her treatment under the mental health and right now it is worrying as no visitors are allowed on the ward and meetings are on line.

I am going to write now to Dr Sarkar as it is therapy not drugs that is needed and referrals to an Endocrinologist and Neurologist.  You cannot treat someone with a physical health condition with psychiatric drugs of any description and therefore these physical tests need to be done first as primary care comes first or should do and this is certainly not the case in Enfield.

Finally the GP surgery locally had been stating that all non emergency appointments had been put on hold but when something is bothering someone so much like Elizabeth who was suffering from chronic pain this should be another matter.  No it is not true that no scans were taking place because I enquired and these could have been done.

The other thing is Elizabeth has constantly complained that no one understands her and I cannot wait until the mandatory training is put in place.  How many like Elizabeth are lumped together with MH and there is a language barrier.  This training can’t be soon enough as far as I am concerned.

https://www.learningdisabilitytoday.co.uk/prevent-avoidable-deaths-by-making-autism-and-learning-disability-training-mandatory

Due to the Cornavirus crisis Elizabeth was discharged from Section 3 by Chase Farm Hospital Enfield.  She had ended up on section 3 through no  care provision in the community since July 2019.  She withdrew “cold turkey” from “medication” that was giving her terrible side effects and , as  seen before, too steep a withdrawal led to withdrawal syndrome.

I was initially going round  to help her within her in the flat with cooking etc and taking her out for drives plus assisting with shopping.  I took her to an emergency chiropody appointment but, once again, no support locally.

With nothing to do in the community what with social distancing/isolation Elizabeth was back in the same situation as she was previously.

Now she is in a worse position.  I could see her going downhill because of the steep withdrawal. With no doctors wishing to help in terms of slow, gradual withdrawals  for convenience sake vulnerable people like Elizabeth are kept on these drugs long term.  This is done with disregard to Manufacturer’s instructions of up to 6 weeks and has resulted in injury to physical health.

I have been challenging the diagnosis for many years now as there are so many different diagnoses in the files and would dispute Schizophrenia.  The term “treatment resistant”  (poor/non metaboliser) has been dropped since the Bethlem (Bedlam) where Elizabeth was prescribed 2 x bnf levels of drugs.

It has been like a brick in the wall trying to tell certain Doctors that there are underlying physical health conditions clearly recorded in the files as follows:

Anterior Region Medial Temporal Compromise –  2009  is a brain injury.  This is in a report from UCL.

Headway stated this  was the “wrong kind” of brain injury but what it boils down to is funding.  Their funding is through North Central London CCG and they provide brain injury/trauma services for Enfield so I told them a brain injury is a brain injury and NOT a psychiatric illness and was discovered way back.    I astonished that I as just a mother have to point out these facts to professionals.

Having come off the drugs cold turkey, Elizabeth was suffering from chronic pain, no doubt as a result of having been on these drugs for so many years. She did not feel at all well and being isolated without care and support she started to phone Police again who she regarded as “friends” then Ambulances were called and Elizabeth did not want or need an ambulance.  Eventually the care coordinator started to visit her home but just visiting was not enough  as there was no structure in care. If Elizabeth was in a place like Camphill Community Trust that offered activities then she would not be back to square one.  Elizabeth would be better placed in one of the Camphill Community Trust’s projects or a care farm and this would be a much nicer environment than a PICU ward and could benefit all the patients as Elizabeth loves animals.   There would be no need to drug her if she was in the right environment.  Whilst the flat is the best accommodation she has ever had without any support whatsoever this is not good.   The accommodation provided under supported living and housing in Enfield has been awful.

I spoke to Elizabeth today currently on Ruby Ward, St Pancreas Hospital.  She has got her phone back after being it without for about a week whilst held in seclusion from around 12 May to 16 May in a Section 136 suite at Chase Farm Hospital which is dreadful.  I sat in the foyer of Chase Farm waiting for news but was not allowed any contact then after she had been moved without the chance of even saying goodbye,  the phone was left behind in the safe on Dorset Ward so I had to travel all the way up to St Pancreas Hospital.  The nearest station was closed and so I had to get a bus part of the way.   I was not allowed to enter the building neither  I am not allowed to visit Elizabeth so I just left a bag of food and clothing and handed her phone to the support worker. Elizabeth has not been tested for Covid 19 yet as normally patients are kept in isolation whilst results are sent back between 24 – 48 hrs.

At least we can get through to her on the phone now but from the phone call I received today, Elizabeth  does not sound too good and sounded very drugged up and her voice was slurred.  She is apparently on Clonazepam again.

One reassuring thing is that a former patient has said good things about this hospital that there is far more going on than locally and I think I have heard good reports about the RC Dr Sarkar from a friend but I will check later to make sure this is the same Dr Sarkar. I was told he reads all his emails which is a good thing as I have sent lots of attachments including the P450 liver enzyme test results of NON METABOLISER.

I will probably go and visit later on in the week with some more things  but I am concerned that she should not be on the clonazepam for too long and that she needs to be referred to the Psychodynamic Psychotherapy Department that I spotted on my way out of hospital premises.

Dr R D Laing’s friend/former colleague told me: “I was once asked at Kings College London what drugs I used when treating patients with psychosis.  When I said that as a psychoanalyst I did not use drugs they were shocked.  I was shocked that they were shocked”.    I have sent these important comments on to Dr Sarkar.  Now I have spotted the kind of care onsite,  I hope that Elizabeth will be given the opportunity of a visit from a psychodynamic psychotherapist.     I have informed Dr Sarkar that Psychotherapy helped Elizabeth enormously in Scotland and Australia.   Therefore she needs to be on next to nothing of drugs and on the day of such visit, must not be given y Clonazepam at all.

I have also told Dr Sarkar that in light of Anterior Region Medial Temporal Compromise an  MRI Scan needs to be done.  Unfortunately Carlton House Surgery wrongly said  no scans were taking place right now so I have seen this in their text message.   Well I have looked into this – that is not true at all, as I was looking to pay for the scan.   With a brain injury how can this be treated with any anti-psychotic drugs and I do not wish for Elizabeth to suffer further injury when I have proven that in Australia and Scotland psychotherapy worked and EMDR should also be tried.  It seems to be that funding is the big issue but in my opinion enormous money has been wasted by provision of wrong care and treatment  so now I would like to see the right care and treatment provided, as if this was provided in the first place Elizabeth would not be in the current situation.

What is letting so many  vulnerable people down is total lack of care and support in the community which leads to them ending up back on the acute wards which could not be a worse place for them in my opinion as drugs given which are NO CURE.

The answer is to send such patients to nice quiet peaceful natural environments in the countryside and there needs to be more centres like Camphill Community Trust or Care Farms.  These are the right environments for Elizabeth to get well and I have proven this already  @Rightful Lives “My Wonderful Care” by Elizabeth.

Message for the RC  Dr Sarkar and Team: 

• Elizabeth needs an MRI scan and special emphasis on the pituitary glands and candida/parasites
• An Endocrinology examination follow up by a specialist which I will detail in my next email.
• Referral to the Professor – an expert on PTSD in Lincoln.
• A referral to Brain Injury Specialists and provision of the specialised trained support workers needed in the community
• A referral to the Psychodynamic Psychotherapist on site and to try EMDR
• I would point out that Hypnotherapy was more effective than the drugs and if any medication should be given it should be natural medication –  If Elizabeth is suffering from chronic pain then she needs to be referred to this clinic in Manchester.   I can take her there myself.

Britain’s first medicinal cannabis clinic opens in Greater …

Ive been at Chase Farm Hospital Enfield most of the day waiting for news as none of us in the family can get through to Elizabeth who is without her phone and held in seclusion in the 136 ward whilst on Section 2.

Elizabeth was upset when she called into the GP surgery.  There has been dispute between the GP Surgery (Carlton House) and Enfield CCG about funding for an MRI scan. Elizabeth has been complaining of chronic pain not surprisingly when you have been put on massive dosage of drugs and 2 x bnf levels for instance at the Royal Bethlem Hospital as documented in the files.

Not only should an MRI scan be done but also Endocrinology and ECG and this is the responsibility of the GP but when someone is autistic defined as LD such vulnerable patients get ignored and this is what has happened so I had to get involved.  Same old story about confidentiality and I have POA too but no one would speak to me but I did get to hear that it was not the GP surgery but Enfield CCG who had refused the funding. Then Enfield CCG said it was not them but the GP Surgery so I have had to write to everyone about this important matter as the correct ward is a brain injury ward in order that all the correct assessments can be made and at the same time checks on the endocrine disorder that I have proven.

So I found out she was put on a mixed ward which was a big mistake and I said so but no one listened then left on the Section 136 ward in seclusion so today I have been up with some clothes and a phone charger and some food but none of us have been able to speak to Elizabeth to see how she is.

The little ward for brain injury trauma would have been the correct ward at Edgware for her to be assessed but now I have heard ENFIELD MH are looking for a PICU bed and this is not good.  Could be far away and I am not well and now I will have to travel a long distance.

No visitors are allowed on the ward and I did not see staff dressed in PPE yet the procedure should be that someone is tested for Covid 19 and put in isolation for between 24 – 48 hours which is fair enough but what if that person has got Covid 19 and none of the staff are wearing any protective clothing.  They might have a flimsy mask or gloves but not PPE.  I am extremely worried as they want to send her a long distance away.  The furthest she has been sent is Wales to Cambian and none of these private institutions have offered the right kind of care.  At Huntercombe she was so drugged up she could barely stand or see.  She spent most of the time asleep which I suppose is convenient to the staff.   She was prescribed massive dosage of drugs they knew full well she was allergic to so it is no wonder why people die in these places so today I wrote the following email to the following:

———- Original Message ———-
From: Susan Bevis
To: enquiries@braininjurygroup.co.uk, matt.hancock.mp@parliament.uk, boris.johnson.mp@parliament.uk, Jeremy Corbyn <corbynj@parliament.uk>, HSCCOM@parliament.uk, rosena.allinkhan.mp@parliament.uk, feryal.clark.mp@parliament.uk, NPL.Consulting.Ltd@gmail.com, carltonhouse@nhs.com, enfccg.communications@nhs.net, enfccg.patientenquiries@nhs.net, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <jinjer.kandola1@nhs.net>, nora.brennan@headwayeastlondon.org, concerns <concerns@cqc.org.uk>
Date: 14 May 2020 at 22:27
Subject: DEPRIVATION OF LIBERTY CHASE FARM HOSPITAL ENFIELD – ELIZABETH BEVIS

My daughter is stuck on a section 136 ward since 12 May 3.00 pm in seclusion not allowed a telephone and not allowed to go out for any exercise.   None of us in the family can contact or speak to her to see if she is OK.

It seems like money is being put before the wellbeing of the most vulnerable people like my daughter in the UK when she has been refused an MRI scan and should have been checked with ECG and endocrinology and nothing has been done under Enfield.

 

Anterior Region Medial Temporol Compromise is NOT  a mental illness it is a brain injury and I want my daughter placed on the correct ward – (nearest I believe is Edgware) so that she can have all the correct assessments done on her brain injury and whilst she is on a Section 2, thorough assessments should be done on her PHYSICAL HEALTH including Endocrine System.    She has physical health problems that cannot be cured with antipsychotic drugs and is a poor/non metaboliser of the drugs so they do not work in any case.

I do not want to see her injury deteriorate further and would therefore like everything addressed in Parliament as to the Mental Health Act which is not fit for purpose and failing to protect vulnerable people like my daughtrer.  Physical health must come first after all it is stated in the DSM.

In Norway they have got it right thanks to Professor Goetszche – no forced drugging of mental health patients.  There needs to be better facilities – noisy/volatile wards are not the right place for my daughter to be sent to.  There has been no care in the community because so much money is being wasted on private sector institutions such as Cygnet and Huntercombe even the RCs there agreed that this was the wrong environment and is costing the public £14000 per week when this should be spent on community care and improving the care under the NHS.

I am not supposed to be going out because I am regarded as being extremely vulnerable but have no choice as I might have to travel to visit the hospital wherever my daughter is sent even if it is hundreds of miles away-  there are no decent facilities in the UK so at least please look into providing the right facilities to investigate the brain injury.

It is a really bad to put someone with LD/autism/PTSD and brain injury onto an acute or picu mental health institution and keep her like a punishment held in the Section 136 ward all this time.  Then I heard she is being sent to a PICU ward and I am most upset about this. PICU wards have not helped in the past and has been a complete and utter waste of public money.

I would like something done urgently before my daughter is moved God knows where because this is affecting my health severely and I have had a stroke because of having to fight for the right kind of care in this country that should be treating people in a humane manner but this is not happening.  She has been sent as far as Wales by the Royal Bethlem Hospital in the past.

I totally disagree with the email from Headway (Nora Brennan)  –  a brain injury such as detailed in a report going back to 2009 should NOT be dismissed and should be properly assessed not ignored. I feel my daughter is being discriminated against under the Equality Act as she has a brain injury.   If the brain injury was discovered as far back as 2009 then why has my daughter been experimented on and given 2 x bnf levels of drugs at the Royal Bethlem Hospital National Psychosis Unit in 2012 where she contracted tachycardia on Clozapine?   Doctors should do no harm and you need to look into some of the doctors who are prescribing dangerous levels of drugs to vulnerable patients and killing them – take a look at the attached example of polypharmacy and shocking degrading research on clozapine.   There needs to be tighter guidelines on prescribing and accountability.  When the GP and CCG do not wish to provide the assessments on physical health I am having to turn to everyone as this needs to be sorted out as my daughter visited countless times to Carlton House Surgery Enfield to ask for help as she was suffering from chronic pain.  Also no way should she have been left in the community in a flat on her own without any support whatsoever.  What is needed is more support in the community for vulnerable people, direct payments helped keep my father with Alzheimers out of home for years and this was refused by Enfield Community Rehab.  Once again down to funding.

I look forward to hearing from you.

 

Kind regards

 

SUSAN A BEVIS –  Mother, Nearest relative and McKenzie Friend

 

 

 

Dear Susan,

As I said in an email last August, Headway East London is commissioned by Enfield CCG to deliver the Enfield Brain Injury Service.

Under our contractual obligations with Enfield CCG we are limited by very strict criteria. In order to accept a referral we need documented evidence of an aquired brain injury. This must include scan results, date of injury, mechanism of injury eg: road traffic accident, assault. This can be a discharge report from acute admission following an injury or a therapy discharge report.

 

 

 

---

From: Susan Bevis
Sent: 11 May 2020 11:48
To: Nora Brennan <nora.brennan@headwayeastlondon.org>; carltonhouse@nhs.com <carltonhouse@nhs.com>
Cc: feryal.clark.mp@parliament.uk <feryal.clark.mp@parliament.uk>;  NPL.Consulting.Ltd@gmail.com <NPL.Consulting.Ltd@gmail.com>
Subject: ANTERIOR REGION MEDIAL TEMPORAL COMPROMISE

Dear Ms Brennan

I refer to your email back in 13 June 2019 at 16:29 in which you stated“unfortunately Headway are unable to diagnose brain injury or influence any medical investigations.”You also went on to state “we are only able to accept referrals for those who have a confirmed diagnosis of brain injury and can provide evidence of this”.

I have had a chance to look extensively at the file records I have and check with Headway where I spoke to a former mental health nurse who confirmed to me that Anterior Region Medial Temporal Compromise is in fact a brain injury whereas my daughter has been treated for a mental health condition by maximum amounts of anti-psychotics 2 x bnf level when all along she had a brain injury.

I have had extensive Endocrinology tests done on my daughter Elizabeth Bevis to prove that she has PCOS and is insulin resistant.  With a faulty endocrine system and being treatment resistant to anti-psychotic drugs the entire pituitary glands could be blocked and in addition cyst was discovered in an MRI scan and I am trying to get up to date scans done.

My daughter also has Neurology reports stating mild tardive dyskinesia as she was making sharp arm movements when she was walking.

She now has chronic physical health condition and suffering joint paints and has balance problems and this as affected her eyesight too.

I do not like the way my daughter has been dismissed or the way her physical health for many years has been ignored by doctors in favour of a mental health diagnosis that none of us can accept.  I would appreciate your comments in this respect.

Attention of The Rt Hon Feryal Clark MP

Please can you help get the referral to brain injury specialists Headway along with the services of specially trained brain injury support workers in who can assist and communicate effectively with her to enable her to live independently within her own flat and wider community  None of this is being provided under mental health services who are not specialists in brain injury.    I think it needs to be recognised that there are many more people like my daughter under mental health services who need more specialist input and if hospital admissions are necessary, then this should be on a specialist ward for brain and trauma injury not an acute mental health ward where antipsychotics are given to suppress not cure the symptoms that are not of mental illness but of brain injury.  After all, how can you treat a brain injury with anti-psychotic drugs?

I also feel that under the mental health, physical health is largely unexplored or ignored and not assessed properly and I am just a mother but have had extensive tests done privately to prove that there are underlying physical health conditions in this case and the diagnosis therefore can not be Schizophrenia.

It should be addressed in Parliament that vulnerable people who sustain injury or in Elizabeth’s case had a pre-existing injury identified from the beginning should have access to proper assessments before a mental health prognosis is given.

To Whom It May Concern – Carlton House Surgery

Please refer Miss Elizabeth Bevis  to Headway brain injury specialists as, it is clearly mentioned in files going back to 2009 in the report by Dr Diana Caine UCL that she has Anterior Region Medial Temporal Compromise.  In addition please refer her to an open scanner for MRI and to a Reproductive Endocrinologist specialist as recommended by Professor Hooper for the necessary check up on the PCOS already identified which should be done on an annual basis.  Also she will need ECG tests due to tachycardia sustained through the titration of clozapine – the irregular heart beat should be monitored regularly.   The Neurologist, Dr Kennedy also mentioned tests for Wilsons Disease but these were not done and should also include Ehlers Danloss Syndrome due to balance problems.  Everything should be explored as after all, it is stated in the DSM that a mental health diagnosis should NOT come before any physical health condition or in cases of drug induced/withdrawal psychosis as was the case due to Prozac withdrawal cold turkey which was prescribed by Carlton House Surgery in the first instance.

Att:  Sir Norman Lamb

As Chair of South London and Maudsley Foundation Trust I would comment on the fact that there needs to be much improvement at the National Psychosis Unit who prescribe drugs at 2 x BNF levels and did not carry out the drug free period of assessment recommended correctly and then sent Elizabeth to Wales where attempts were made to displace me as Nearest Relative and isolate Elizabeth from her family.   This is supposed to be a world renowned hospital but I am afraid I have not got a good word to say and have all the files on this hospital that I would rate rock bottom.  No contra indicated drugs should be given to treatment resistant patients like Elizabeth as I have proven that she cannot metabolise the drugs and what should have been done is extensive endocrinology tests which I paid for myself which revealed underlying physical health conditions.

Yours sincerely

Susan Bevis

 

What lengths do you have to go to in order to highlight what is wrong under the NHS in this Country.    I could not see that staff were being protected and patients and as I sat there in the foyer nearly all day long requesting that Elizabeth be sent to a ward where they can investigate the brain injury and refer to other specialists only to hear she is being sent to a PICU ward which has already in the past been a complete waste of money and these wards isolate patients and they are put on high levels of drugs such as Huntercombe Roehampton –  Every single drug has been tired on Elizabeth and Clozapine was one of the worse.  To this email I attached an example of meds prescribed at Cygnet and horrific research on Clozapine that caused tachycardia and also the P450 liver enzyme tests that showed NON METABOLISER.  Now that I have seen and studied the files going back to 2009 I want to know why Elizabeth’s physical health has been ignored and in addition why is everyone’s physical health being ignored under the mental health system especially when it is proven there are underlying physical health problems that the GP should have investigated.

ON two occasions now Elizabeth has been discharged from hospital to her flat where she lives independently but she had NO SUPPORT under ENFIELD.  This is an area that have spent a fortune on legal action against me and now in despair I have had to contact everyone as when a vulnerable person goes time and time again to the GP and is calling ambulance and police out this person needs to have their PHYSICAL HEALTH investigated especially when they are complaining of chronic pain.

I would also like to see accountability in terms of prescribing because such drugs cause injury.

I feel Elizabeth has been discriminated against – to be told by a brain injury specialist that this is not the right kind of brain injury is not satisfactory.  A brain injury is a brain injury and I have checked the condition Anterior Region Medial Temporal Compromise.

The care coordinator has sent me the following but I have responded with:

.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2927029/

https://pubmed.ncbi.nlm.nih.gov/9276847/

“I am sceptical about the brain study for a number of reasons.  The cohort is not, as the article suggests matched to the control by the very presence of neuroleptics.  In my school we would consider that a major confounder similar to the ADHD study done some years ago.  Neuroleptics significantly alter brain function and the study has not properly accounted for that as a factor in the MRI results.

Brain scans are notoriously inaccurate in determining mental functionality.  I was involved in a study like this some years ago where there was all an indication of ‘abnormal’ pre-frontal activity.  It was totally inconclusive and a number of us considered the study itself unethical.  

One of my students has just done a research project on how SSRI’s prescribed long term affect brain architecture.  Long term use of neuroleptics alters brain function significantly.  In short it would have been extremely unusual if the MRI scans of the cohort and the control matched.  The age range of the patients (18-65) is far too broad and is again a major confounder in considering brain function.  Some of those patients will have been on neuroleptics for decades including hideous drugs like Largactyl and Stelazine.  Extrapyramidal side effects in that group would be highly pronounced and not in the control.  Matching the images is therefore useless.   

The study talks of impaired cognition in the patients in the cohort.  The neuroleptics given over such a period would cause that just as acutely as any suggested lesion.  Once again this means the control is not matched.

The Harrow study has carried out a proper comparison of cognitive function between patients with psychoses continually medicated and a properly matched control of those who had psychotic episodes but were not medicated.  The cognitive function in the non medicated group was higher than that of long term medicated.  

My overall assessment is the study is flawed in the absence of a proper evaluation of the confounders.

I, by the way do not consider the ‘diagnosis’ of schizophrenia to have any scientific merit at all and no longer classify patients with this label.  ”   

THE LABEL OF SCHIZOPHRENIA SHOULD THEREFORE BE ABOLISHED AND I have the most accurate report from Dr Bob Johnson (complex PTSD)  Intensive trauma therapy required and then Dr Moncrieff suggested Endocrine tests so why aren’t these tests being given to all MH patients first before a mental health label is given that is highly inaccurate and damaging in that the treatment caused injury when there are underlying physical health problems.   Why does autism now come under MH?  Under MH there is not the specialist care needed for brain injury, LD or autism and this is where something needs to be done.  If there is a shortage of beds under MH then Elizabeth could have been referred to the brain injury and trauma ward to have the referrals/assessments she requested which was not provided by her GP.

The MHA should be there to protect vulnerable people but vulnerable people are not being protected and their lives put at risk especially during this disturbing time and- every effort should be made to enable family contact which is not being done especially when you can no longer visit on the ward.

I will let you all know when or if I hear from any one of the above in this important matter that concerns so many under mental health.  This is certainly a test to see who really cares about the weak and vulnerable in the UK and this goes to the CQC – this is not just an individual case to be investigated as many people are being affected especially those who lack communication skills because they have a brain injury.

enquiries@braininjurygroup.co.uk, matt.hancock.mp@parliament.uk, boris.johnson.mp@parliament.uk, Jeremy Corbyn <corbynj@parliament.uk>, HSCCOM@parliament.uk, rosena.allinkhan.mp@parliament.uk, feryal.clark.mp@parliament.uk, NPL.Consulting.Ltd@gmail.com, carltonhouse@nhs.com, enfccg.communications@nhs.net, enfccg.patientenquiries@nhs.net, “KANDOLA, Jinjer (BARNET, ENFIELD AND HARINGEY MENTAL HEALTH NHS TRUST)” <jinjer.kandola1@nhs.net>, nora.brennan@headwayeastlondon.org, concerns <concerns@cqc.org.uk>